Caring for a Loved One with Alzheimer’s Disease:
ADLs are Activities of Daily Living, usually done during a normal day, such as bathing, grooming,
Agnosia is an inability to recognize things, or people in the absence of any sensory impairment
Alzheimer’s disease: This is the most common form of dementia, accounting for more than half of all
cases. Alzheimer’s disease is caused by the accumulation of plaques and tangles in the brain. Plaques are
formed by sticky clumps of amyloid protein. Tangles result from twisted protein fibers known as ‘tau’
within the structure of the nerve cells in the brain. These changes cause the progressive deterioration of
the brain and its functions. People with Alzheimer’s disease have difficulty forming new memories,
expressing and understanding language, recognizing people or ordinary objects, and performing learned
Amnesia: Amnesia refers to memory loss or the inability to recall information or events. This happens in
dementia as a result of damage to the brain. Because of damage to the part of the brain that saves
experiences into memory, people with Alzheimer’s disease lose the ability to form new memories. As a
result, they later have no recall of a recent event or new information (short term memory loss). They
may be good at hiding these losses by maintaining socially appropriate conversation. Despite short-term
memory problems, people with Alzheimer’s disease can often remember key events from the distant
past (long-term memory). However, as the disease progresses, even these memories will be lost.
Anti-anxiety medications: This refers to a category of drugs that target reduction of symptoms of
anxiety, which is a common reaction to not being able to remember things, or inability to understand
what is happening. Common examples of these medications include Ativan or Xanax. Common side
effects include drowsiness and unsteadiness, among others.
Anti-depressants: Medications that lessen the symptoms of depression. Common examples of anti-
depressants include Prozac, Zoloft, Effexor, and Remeron. There are a variety of side effects among
these various medications. Common side effects may include drowsiness, dizziness, sleep disturbances,
dry mouth, GI (gastro-intestinal) disturbances such as constipation or nausea, changes in appetite or
Anti-psychotic medications: These medications (sometimes called neuroleptics) are used to lessen the
intensity of psychotic symptoms such as hallucinations or delusions, and sometimes for aggressive
behaviors. Common examples include Haldol, Zyprexa, Risperdol, and Seroquel. Non-pharmacy
approaches should be tried first and proven unsuccessful before these medications are used as there are
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concerns over side effects, which can include movement disorders, or the development of diabetes.
These side effects are associated with distinct medication categories within this group.
Anxiety is a mental health condition that is characterized by a constant feeling of uneasiness and worry.
Many people with dementia suffer from anxiety as a result of not being able to remember things, or
understand what is happening around them. Anxiety interferes with attention span and the ability to
focus, which can worsen the memory and thinking difficulties already experienced with dementia.
Anxiety symptoms can be helped with anti-anxiety medications.
Aphasia: People with aphasia have difficulty with communication. They may have difficulty expressing
themselves (expressive aphasia) in not being able to find the right words, using the wrong words, or
perhaps even making up words. Aphasia may also be apparent in the person not being able to
understand what is being said (receptive aphasia). This is commonly seen in dementia when the person
is unable to correctly follow verbal instructions. Problems with communication may lead to increased
frustration and behavioral challenges, such as screaming and yelling.
Apraxia is a problem with coordinating consecutive body movements that are necessary to perform
routine activities and tasks. Common difficulties include walking, eating, dressing, and hygiene care.
Caregiver Journal is a written record maintained by caregivers to document specific experiences of
caring for someone with dementia. It may include changes noted in mood, behaviors, or symptoms, or a
recounting of a particular experience. The personal feelings or reactions of the caregiver are also
important to record in relation to specific experiences. Caregiving for someone with dementia can be
very overwhelming and often meaningful information exchanged during appointments with professional
caregivers is lacking because the family caregiver cannot remember the details during the appointment.
A written journal that keeps track of the details may be a very helpful tool for professional caregivers to
help problem solve caregiving challenges and provide needed support to the caregiver.
Delirium is noted as a change in a person’s mental state with increased confusion, and decreased ability
to maintain focus or attention. This change is rapid, occurring within hours or over a few days. It results
from physical or chemical changes in the body due to a medical problem. Signs of delirium may be
missed in someone with dementia. Since a person with dementia may already be confused, the onset of
delirium is often viewed as a ‘worsening’ of the dementia. Rapid changes in a person’s mental state
should always be reported to the doctor to avoid any complications, or even death, from an untreated
Delusion: A fixed false belief. Many people with dementia have difficulty understanding what is
happening around them. They may also have difficulty understanding the difference between what is
real and what is imagined. Delusions may develop as a means of explanation for what is not understood.
For example, a person with dementia who no longer recognizes his own clothes in the closet may accuse
his spouse of having an affair, believing that those clothes belong to another man. These false beliefs
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are described as ‘fixed’ because no extent of explanation or argument will convince the person with
dementia of the truth. Dementia refers to a decline in mental function that results in loss of memory, thinking abilities, and
function. Numerous medical conditions are associated with dementia. Alzheimer’s disease is the most
common cause of dementia. Other more common causes include Vascular Dementia, Frontotemporal
Dementia (FTD), and Dementia with Lewy Bodies. Dementing illnesses are generally irreversible and
result in progressive deterioration of the brain.
Depression is a mood disorder that is often characterized by feelings of helplessness, hopelessness, and
despair. The individual with depression may express feelings of sadness, and demonstrate social
withdrawal or isolation, changes in eating or sleeping patterns, loss of energy, and loss of interest
and/or pleasure in activities previously enjoyed. Depression can be treated with anti-depressant
medication as well as alternate care approaches.
Diversional Activities: Activities that serve to stimulate and distract a person, such as taking a ride,
singing/dancing, reading, or playing a game.
Don’t correct – Redirect. This is a helpful approach in dealing with the challenges of dementia care. Try
to avoid correcting the person with dementia when a mistake has been made. Corrections only bring
focus to the mistake and can cause embarrassment or frustration. A person with dementia can even
become angry feeling as if he or she is being treated like a child. To redirect the person is to provide
support or guidance in a positive manner to help the person accomplish the desired task or goal.
Drop-off Activities: An activity that can be left for a person to do on his or her own.
Environmental Problems: Problems caused by things surrounding a person, like noise and light.
Frontal lobes: Areas in the front of the brain that control motivation, manners, judgment, self-control,
Frontotemporal dementia (FTD): This form of dementia is caused by the deterioration of the frontal
and temporal lobes of the brain. These lobes of the brain control motivation, emotion, judgment, self-
control, and the ability to plan. Individuals who have this type of dementia will show personality changes
and behaviors that are often viewed as socially inappropriate, such as grabbing food off of another
person’s plate, or disrobing in a public area.
Generic: the chemical name of a drug. Different manufacturers may sell the same drug by chemical
name under different trade (or brand) names. For example, ibuprofen is the chemical name for the
medication sold as both Motrin and Advil.
Hallucinations: Seeing, hearing, or feeling things that aren’t present.
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Hoarding: Collecting and hiding objects. People with dementia often collect objects such as buttons,
sugar packs, jewelry, mail, and food. One risk of this behavior is that persons with dementia may hoard
food and then eat the food after it has spoiled. One tool that has been successful in managing hoarding
behaviors is to give the person a box of safe and familiar objects to look through and take things from.
Incontinence: Toileting “accidents” involving the bowel or bladder. This can result because of a problem
with the function of the body organ controlling elimination, or from the loss of abilities associated with
dementia. For example, someone with dementia may not be able to locate or recognize the toilet, or
may not be able to unfasten and remove clothing necessary for toilet use.
Intellectual Activities: Activities that encourage thinking, such as going to a lecture, reading, trivia, or
Lack of Insight: When a person is unable to recognize that there is anything wrong with him or her.
Medication: Any substance, other than food, used in prevention, diagnosis, or cure of a disease.
Memory enhancing drugs: These medications may help decrease memory impairment or enhance the
ability to think or reason. Examples of these drugs include Aricept, Exelon, and Namenda.
Neurologist: A physician who specializes in the diagnosis and treatment of disorders involving the
nervous system. A neurologist can be vital in obtaining an accurate diagnosis of dementia, as well as
providing information about disease progression, the explanation of symptoms, and discussion of
Occipital lobes: Areas in the back of the brain that are important for vision and making sense out of
what you see. When these areas are damaged, the brain may not be able to ‘interpret’ the visual image
that is transported there by the optic nerve. As a result, a person may develop agnosia, or the inability
to recognize people or ordinary objects.
Over-the-counter (OTC) medications: Medications that are available for purchase without a doctor’s
Pacing: Walking back and forth in a driven way.
Parietal Lobes: Areas in the upper central part of the brain that are involved in spatial abilities, such as
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Physical Activities: Activities that involve physical movement of the body that promote health,
Physical Problems: Physical sensations or experiences that cause uncomfortable symptoms such as
being too cold, too hot, an urgent need to toilet, pain, fatigue, etc. These sensations may contribute to
behavioral problems as the person with dementia may not be able to express what is wrong in order to
Prescription: Medications requiring a written order by a doctor.
Psychiatric problems: Disorders of mood (such as depression), perception (such as hallucinations), or
Rummaging: Often people with dementia spend hours looking for things and moving objects around. As
in hoarding, it can be helpful to give the person a box of safe objects and familiar items to rummage
Side Effects: An unintended effect of a medication.
Social Activities: Activities that encourage interaction with other people.
Specialists: For the treatment of Alzheimer’s disease, there is often a “team approach” involving
multiple healthcare providers who have different areas of expertise. These providers include physicians
(i.e., neurologists, internists, and psychiatrists), nurses, social workers, psychologists, activity
Spontaneous Activities: Unplanned activities that grow out of a person’s interest.
Sun-downing is an observation that people with dementia tend to get more confused in the afternoon
and evening when the sun is setting. This may be a combination of fatigue, and loss of ability to orient
oneself and understand the environment as it becomes dark.
Task breakdown: Breaking down a task into steps to make it easier for the person with dementia to
perform the task without getting confused or distracted.
Temporal Lobes: Areas on the side of the brain that are involved in memory, emotion, and
Trade Name: The name given to a drug by the company that makes it; also known as the ‘brand name’.
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Treatment Plan: A treatment plan is a written plan of care that guides what care is to be given, when
care is to be given, and by whom. Health care is given through a team of individuals from various
disciplines (or specialties) working together to meet a person’s needs and enhance existing abilities. The
treatment plan is based on a comprehensive assessment of medical conditions, physical function,
mental, emotional, and social needs. Input from the family and/or the person being treated is often
included as the plan is developed. In long-term care settings, treatment plans are commonly referred to
as a “Care Plan” or “Service Plan”.
Vascular dementia: This type of dementia results from a problem with blood circulation to the brain.
This often results from repeated insults to the brain from a series of small strokes. With each
occurrence, more damage occurs resulting in stepwise decline. Damage can also happen suddenly as a
result of a major stroke. Risk factors for vascular dementia are the same as for heart problems: high
cholesterol, high blood pressure, diabetes, obesity, history of heart attack.
5D Process: A systematic method for problem solving challenging behaviors and care issues.
Describe the behavior/challenge/symptom. Consider all of the facts including what was seen,
what was heard, where did it happen, when did it happen, who else was there and what was
Decode: Decoding is a systematic process to evaluate possible contributing factors to
problematic behaviors or symptoms. Something that contributes to these challenges is known
as a ‘trigger’. It is important to find the trigger in order to resolve the issue. To find the trigger,
consider the following factors that may be contributing to the situation: Is it related to the
thinking or memory problems being experienced? Is there a physical or medical problem, such
as a stomach ache, or need to go to the bathroom? Is it a psychiatric problem such as
depression? Is it because of environmental stressors such as noise, lighting, or room
temperature? Is it because of the approach of the caregiver – for example, did the person feel
Devise a plan. Review what you can identify as possible triggers, or causes for the behavior, and
figure out what can be done to remove or minimize them.
Do it: Try the different solutions that you come up with, one at a time.
Determine if the solution works. If it does, communicate it with everyone caring for your loved
one. If it doesn’t work, please don’t give up, try another approach.
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MEDICATION LIST SOME MEDICATIONS MAY AFFECT YOUR ELIGIBILITY TO DONATE BLOOD. PLEASE TELL US IF YOU. Are being treated with the and are taking or have which is also following types of in the last. ever taken. medications. Anti-platelet agents (usually taken to prevent stroke or heart attack) Anticoagulants or “blood thinners” (usuall
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